Hello everyone.
On Monday, December 29, I will be having minor surgery to switch out my Baclofen pump. Because I have a spinal cord injury that is incomplete, I have muscle spasms. Most of the time they are full body spasms that include my legs, arms, and back; they last anywhere from 5 to 20 seconds. There is a medicine called Baclofen that helps with spasms and reduces the intensity of them. I take 15 mg orally a day. I also have a Baclofen pump that is inserted just below my skin on the right side of my abdomen. The pump has a catheter that runs around my back and is inserted into my spinal cord. I receive a total of 1189 micrograms (there are 2000 mcg/per milliliter) of Baclofen a day into my spinal cord to help reduce the spasms. Every six hours, the pump administers about 275 mcg, four times a day. When the drug goes directly into my spinal cord, it gets to me faster and bypasses my digestive system, absorbing differently.
My Baclofen pump was inserted in November of 2003. Every three weeks someone comes to my home to refill the pump with 18 mL of Baclofen. She sticks a needle into the center of the pump, draws out the remaining Baclofen, and refills it again. The pump is about the size of a hockey puck with a rubber stopper the size of an eraser head that the needle goes through. The battery life of a Baclofen pump is 5 to 6 years. When the battery runs low, the Baclofen pump will beep at a constant rate letting me know. It beeps for about a month before the battery dies, however, I wouldn't want get to the point where it beeps and I only have 30 days to schedule a surgery to replace it. That is one reason why I am going to have surgery to get my pump switched. I have my winter break from the middle of December through the middle of January, so the timing is convenient. Also, they have come out with a new kind of Baclofen pump called the synchromed 2. It is the same size, however, it holds twice as many milliliters. I will only have to refill it every six weeks instead of every three.
If I didn't have the Baclofen pump my spasms would be much worse than the description in the first paragraph. I would probably have to restrain my arms and legs to my bed rails, and hope that I wouldn't fly out of the bed. I am very thankful for my Baclofen pump and am excited to get the new one. Wish me luck! I will talk more about it after the surgery is complete.
Jenni
Friday, November 28, 2008
Thursday, November 27, 2008
Happy Thanksgiving
All in a Word
T for time to be together, turkey, talk, and tangy weather.
H for harvest stored away, home, and hearth, and holiday.
A for autumn's frosty art, and abundance in the heart.
N for neighbors, and November, nice things, new things to remember.
K for kitchen, kettles' croon, kith and kin expected soon.
S for sizzles, sights, and sounds, and something special that abounds.
That spells ~~~THANKS---for joy in living and a jolly good Thanksgiving.
-Aileen Fisher
Thanksgiving is my favorite holiday. I love the food and the time spent with the family. Today we're hosting Thanksgiving at our house. I think there will be about 12 of us. Everyone is arriving at 3 PM and we are eating at 4 PM. The house smells wonderful! I am also excited for apple pie (after I stuff my face with turkey, mashed potatoes, and green beans). I hope all of you are having a wonderful Thanksgiving and are surrounded by people you love because today is the day to give thanks.
Jenni
T for time to be together, turkey, talk, and tangy weather.
H for harvest stored away, home, and hearth, and holiday.
A for autumn's frosty art, and abundance in the heart.
N for neighbors, and November, nice things, new things to remember.
K for kitchen, kettles' croon, kith and kin expected soon.
S for sizzles, sights, and sounds, and something special that abounds.
That spells ~~~THANKS---for joy in living and a jolly good Thanksgiving.
-Aileen Fisher
Thanksgiving is my favorite holiday. I love the food and the time spent with the family. Today we're hosting Thanksgiving at our house. I think there will be about 12 of us. Everyone is arriving at 3 PM and we are eating at 4 PM. The house smells wonderful! I am also excited for apple pie (after I stuff my face with turkey, mashed potatoes, and green beans). I hope all of you are having a wonderful Thanksgiving and are surrounded by people you love because today is the day to give thanks.
Jenni
Wednesday, November 26, 2008
Heroes
"I have never been especially impressed by the heroics of the people convinced they are about to change the world. I am more awed by the heroism of those who are willing to struggle to make one small difference after another."
-Ellen Goodman
I have many heroes in my life. They are the people that have stood by me throughout my life. They are the people that are willing to give up their time to spend time with me. They are the people that have made a difference in my life just by being in it. They are willing to be there for me when times are tough. They don't know their heroes; it is invisible in their eyes, but to me they're making "one small difference after another", just like the quote says.
Jenni
-Ellen Goodman
I have many heroes in my life. They are the people that have stood by me throughout my life. They are the people that are willing to give up their time to spend time with me. They are the people that have made a difference in my life just by being in it. They are willing to be there for me when times are tough. They don't know their heroes; it is invisible in their eyes, but to me they're making "one small difference after another", just like the quote says.
Jenni
Tuesday, November 25, 2008
Crazy Cats
Jenni
Sunday, November 23, 2008
The Power of Technology
For those of us who lack independence, technology can be a powerful thing. It frees us from our inability to communicate otherwise. It is our way of gaining back the independence that we lost or do not have. Technology is growing every day, allowing us to express ourselves and have the independence to do things that we would not otherwise be able to.
I myself use technology for daily activities. In order to type and move freely through the Internet I use a voice-activated program called Dragon NaturallySpeaking. I am able to speak into a microphone and use commands that allow me to independently use a computer. It is so easy to use and cool that you can just say what you want and have the words magically appear on the computer. If you click on the link, there is a video demonstration of how Dragon works.
Also, in order to have independence while lying in bed, I use a voice-activated Environmental Control Unit by Quartet Technology Inc. This box and microphone give me all the independence I need to control things in my environment. It is capable of controlling anything electronic or that can be plugged in. I use it for my radio, phone, DVD player, and TV. It is able to control lights as well, however, it doesn't work with my lights because it is not on the same strip. If I wanted to, I could have it control my bed, lamp, fan etc. There are endless possibilities. It is very easy to train and responds fairly well to my voice. By the way, his name is Denver. He repeats everything I say to him. He is very polite and says excuse me when he doesn't understand what I say.
The last piece of technology that I use every day allows me to move freely without help. It is called a Tongue Touch Keypad by newabilities. By using my tongue, I am able to drive my wheelchair with ease. The Tongue Touch Keypad fits in the roof of my mouth similar to a retainer. It has nine buttons to choose from and there is a menu screen with a choice of nine options. If I push the back left button (chair), I will be able to move my wheelchair. If I push the front button (position), I can tilt or recline. There are other features to the chair that work with the Tongue Touch that I don't have. If I wanted to, I have the option to use the Tongue Touch for my computer and environmental controls such as the lights and TV. However, these fancy features come at a cost. I would have to buy each one separately. If you click on the link above, the newabilities website will show you all the features and tell you about the Tongue Touch Keypad.
The Tongue Touch Keypad does have its faults. Because it is a wireless device, other things sometimes interfere. I may be in an elevator and if I'm not on the park mode, the interference will push buttons and make the wheelchair start moving by itself. Funny sounding, but not fun when I'm driving and the interference will make it so I can't stop and I run into walls. I guess it is kind of funny when I think about it after the fact.
I am thrilled to have this type of technology in my life. It is only a matter of time before they come up with something new that will help me become more independent. Often times I have people guess how I drive my wheelchair. Most of them say "with your eyes" or "with your mind". It sounds crazy but this technology is out there. I watched this on 60 minutes a couple of weeks ago. There is a cap that fits over your head and measures your brain and thoughts. It is able to determine which letters you want to use to type on a computer just by you thinking it. I wanted to post the video, however, there was an error. Click here to see the video called "Harnessing the Power of the Brain".
Just think of the other possibilities. I am excited to have shared this technology with you. If you would like to purchase Dragon NaturallySpeaking or the Environmental Control Unit by Quartet, or if you would like to find out more about assistive technology, click here to contact The Speech Gurus.
Jenni
I myself use technology for daily activities. In order to type and move freely through the Internet I use a voice-activated program called Dragon NaturallySpeaking. I am able to speak into a microphone and use commands that allow me to independently use a computer. It is so easy to use and cool that you can just say what you want and have the words magically appear on the computer. If you click on the link, there is a video demonstration of how Dragon works.
Also, in order to have independence while lying in bed, I use a voice-activated Environmental Control Unit by Quartet Technology Inc. This box and microphone give me all the independence I need to control things in my environment. It is capable of controlling anything electronic or that can be plugged in. I use it for my radio, phone, DVD player, and TV. It is able to control lights as well, however, it doesn't work with my lights because it is not on the same strip. If I wanted to, I could have it control my bed, lamp, fan etc. There are endless possibilities. It is very easy to train and responds fairly well to my voice. By the way, his name is Denver. He repeats everything I say to him. He is very polite and says excuse me when he doesn't understand what I say.
The last piece of technology that I use every day allows me to move freely without help. It is called a Tongue Touch Keypad by newabilities. By using my tongue, I am able to drive my wheelchair with ease. The Tongue Touch Keypad fits in the roof of my mouth similar to a retainer. It has nine buttons to choose from and there is a menu screen with a choice of nine options. If I push the back left button (chair), I will be able to move my wheelchair. If I push the front button (position), I can tilt or recline. There are other features to the chair that work with the Tongue Touch that I don't have. If I wanted to, I have the option to use the Tongue Touch for my computer and environmental controls such as the lights and TV. However, these fancy features come at a cost. I would have to buy each one separately. If you click on the link above, the newabilities website will show you all the features and tell you about the Tongue Touch Keypad.
The Tongue Touch Keypad does have its faults. Because it is a wireless device, other things sometimes interfere. I may be in an elevator and if I'm not on the park mode, the interference will push buttons and make the wheelchair start moving by itself. Funny sounding, but not fun when I'm driving and the interference will make it so I can't stop and I run into walls. I guess it is kind of funny when I think about it after the fact.
I am thrilled to have this type of technology in my life. It is only a matter of time before they come up with something new that will help me become more independent. Often times I have people guess how I drive my wheelchair. Most of them say "with your eyes" or "with your mind". It sounds crazy but this technology is out there. I watched this on 60 minutes a couple of weeks ago. There is a cap that fits over your head and measures your brain and thoughts. It is able to determine which letters you want to use to type on a computer just by you thinking it. I wanted to post the video, however, there was an error. Click here to see the video called "Harnessing the Power of the Brain".
Just think of the other possibilities. I am excited to have shared this technology with you. If you would like to purchase Dragon NaturallySpeaking or the Environmental Control Unit by Quartet, or if you would like to find out more about assistive technology, click here to contact The Speech Gurus.
Jenni
Saturday, November 22, 2008
Charlie Bit My Finger
I just had to post this video. It is one of my favorites from YouTube. I don't know why I find it so funny. It has been played on The Ellen DeGeneres Show, The Tonight Show, Oprah etc. I'm sure some of you have probably already seen it. If any of you have kids I'm sure you can relate to this video. So, here it is:
I can't understand why he would stick his finger in his brother's mouth again. I found a follow-up video on YouTube from their regional news. It's interesting to see the boys two years later. You can also find other videos from them by clicking here.
Jenni
I can't understand why he would stick his finger in his brother's mouth again. I found a follow-up video on YouTube from their regional news. It's interesting to see the boys two years later. You can also find other videos from them by clicking here.
Jenni
Thursday, November 20, 2008
Nursing and Daily Schedule
Because I'm on a ventilator, I have nursing care 24/7. They work 12 hour shifts and most of them work three days a week (full-time). In order to cover every shift, I need about 5 or 6 nurses. However, by December 3, I will be down to 3. Usually it is the nurses decision to leave and move on to a new job. I am constantly worried that a nurse will leave because of whatever reason and we will be stuck without a nurse. It's a struggle to find caregivers who are a good match to work with. We end up interviewing a few before we find one that will work out. Whenever we don't have nursing coverage, my family has to step in and be the nurse. My mom and sister, Kristen, both know my cares.
I don't think many people realize what it is like for a quadriplegic and the daily routine that we go through. My nurses do most everything for me. I wake up every morning at 5 AM to start my cares. I start off with my bowel program. Then I do range of motion and wash my legs and my face. By the time I'm done with these cares, it is 6:30 AM. The nurses change shifts at 7 AM. After the nurses have given report, I then change my shirt and wash my upper body, put my pants on and then get up in my wheelchair. I usually get up sometime between 9 and 10 o'clock. I brush my hair and my teeth and am finally ready for the day. I get back into bed at 5 o'clock and do range of motion again. I am in bed for the night. I go to sleep at 10 PM and do it all over again the next morning. Wednesday and Saturday mornings I skip the bed bath and take a shower. Monday mornings I just wash my hair in bed.
Now comes my confusing and chaotic schedule. I have physical therapy Tuesday Friday at 8:15 AM and Wednesday Thursday at 4:15 PM. During two of my therapy sessions I go in the standing frame. On Monday I get a massage at 9 AM. I also go to school Monday, Wednesday and Friday. Monday and Friday I leave at 11:30 AM and get back around 3 PM. Wednesdays I leave at 10:30 AM after my shower, and get back around 3 PM, just in time for PT. Once a month I see a psychologist, and not to mention the numerous doctor appointments that I have. Don't ask me how I keep this schedule straight. The good thing is that I love staying busy. Could you imagine me taking two classes next semester?
Yes, I do have a lot to go through and many things to do during the day. I didn't share my daily schedule to confuse you or make you feel exhausted for me. I just wanted people to know what I and others go through each and every day. I want people to know that when times may be tough, not to give up. Just because your day may seem stressful or chaotic, others may be having an even harder day. I don't know how I do it, but I manage to stay positive and never give up. There are others who may not be as strong as me and are having difficulty living the life of a quad. Take this time now to think about those who may be struggling with their daily schedule, self-esteem, lack of independence etc.
Jenni
I don't think many people realize what it is like for a quadriplegic and the daily routine that we go through. My nurses do most everything for me. I wake up every morning at 5 AM to start my cares. I start off with my bowel program. Then I do range of motion and wash my legs and my face. By the time I'm done with these cares, it is 6:30 AM. The nurses change shifts at 7 AM. After the nurses have given report, I then change my shirt and wash my upper body, put my pants on and then get up in my wheelchair. I usually get up sometime between 9 and 10 o'clock. I brush my hair and my teeth and am finally ready for the day. I get back into bed at 5 o'clock and do range of motion again. I am in bed for the night. I go to sleep at 10 PM and do it all over again the next morning. Wednesday and Saturday mornings I skip the bed bath and take a shower. Monday mornings I just wash my hair in bed.
Now comes my confusing and chaotic schedule. I have physical therapy Tuesday Friday at 8:15 AM and Wednesday Thursday at 4:15 PM. During two of my therapy sessions I go in the standing frame. On Monday I get a massage at 9 AM. I also go to school Monday, Wednesday and Friday. Monday and Friday I leave at 11:30 AM and get back around 3 PM. Wednesdays I leave at 10:30 AM after my shower, and get back around 3 PM, just in time for PT. Once a month I see a psychologist, and not to mention the numerous doctor appointments that I have. Don't ask me how I keep this schedule straight. The good thing is that I love staying busy. Could you imagine me taking two classes next semester?
Yes, I do have a lot to go through and many things to do during the day. I didn't share my daily schedule to confuse you or make you feel exhausted for me. I just wanted people to know what I and others go through each and every day. I want people to know that when times may be tough, not to give up. Just because your day may seem stressful or chaotic, others may be having an even harder day. I don't know how I do it, but I manage to stay positive and never give up. There are others who may not be as strong as me and are having difficulty living the life of a quad. Take this time now to think about those who may be struggling with their daily schedule, self-esteem, lack of independence etc.
Jenni
Tuesday, November 18, 2008
See Me for Me
What causes people to stare at the unknown? Fear? Curiosity? What causes people to react differently to those with disabilities? Unacceptance? I know what it's like to be stared at. I know what it's like to have people stop in their tracks just to get a glimpse of the unknown. Why can't people just see me for me and not my disability? Why can't they just accept who I am and what I'm about. I may not look like everybody else, but that doesn't give others the right to stare. These questions and thoughts inspired me to write this poem:
See Me for Me
I am alive.
I am here.
I do exist.
Yes, I look different.
I have a disability.
I am paralyzed.
I am in a wheelchair.
I am on a ventilator.
Does that matter?
Apparently it does.
I don't like staring.
I don't like gawking.
I don't like whispers.
I don't like pointing.
See me for me.
I like people.
I have friends.
I have caregivers.
I have family.
I make a difference.
I am friendly.
I care.
I love.
I speak.
I write.
I paint.
I am me.
I know this post may be shocking to some people or a wake-up call to others. I wake up every morning and say to myself "What can I do today to make a difference? Who am I going to inspire?" However, I get interrupted by curious and fearful people who choose to stare at the unknown. Stare at someone with a disability who is just trying to make it through the day. I am here to tell all those people to see me for me. See others with disabilities for who they are. I would rather have someone come up to me and ask me what happened; ask me who I am and what I'm about; ask me how I got to where I am today. I am proud of who I am. I am proud of the challenges that I have overcome. I am proud of what I've accomplished. I am proud of the person I am today. And I will tell you that; if only you would just ask.
Now, most of this post has been kind of negative. I guess I'm just letting go of some of my frustrations. It didn't used to bother me as much as it does now. Maybe because I'm starting to notice it more. I used to just ignore it. Even though I think it is rude, I don't usually get upset with the people who are staring. I know they are just curious. Many of them have never seen someone on a vent before. Especially little kids. Sometimes I just smile at the people who are staring. However, I need to come up with some line or a sign to put people at ease; something to fulfill their curiosity. I think I'm going to put a sign on my wheelchair that says "I was in a car accident". That would solve a lot.
Jenni
See Me for Me
I am alive.
I am here.
I do exist.
Yes, I look different.
I have a disability.
I am paralyzed.
I am in a wheelchair.
I am on a ventilator.
Does that matter?
Apparently it does.
I don't like staring.
I don't like gawking.
I don't like whispers.
I don't like pointing.
See me for me.
I like people.
I have friends.
I have caregivers.
I have family.
I make a difference.
I am friendly.
I care.
I love.
I speak.
I write.
I paint.
I am me.
I know this post may be shocking to some people or a wake-up call to others. I wake up every morning and say to myself "What can I do today to make a difference? Who am I going to inspire?" However, I get interrupted by curious and fearful people who choose to stare at the unknown. Stare at someone with a disability who is just trying to make it through the day. I am here to tell all those people to see me for me. See others with disabilities for who they are. I would rather have someone come up to me and ask me what happened; ask me who I am and what I'm about; ask me how I got to where I am today. I am proud of who I am. I am proud of the challenges that I have overcome. I am proud of what I've accomplished. I am proud of the person I am today. And I will tell you that; if only you would just ask.
Now, most of this post has been kind of negative. I guess I'm just letting go of some of my frustrations. It didn't used to bother me as much as it does now. Maybe because I'm starting to notice it more. I used to just ignore it. Even though I think it is rude, I don't usually get upset with the people who are staring. I know they are just curious. Many of them have never seen someone on a vent before. Especially little kids. Sometimes I just smile at the people who are staring. However, I need to come up with some line or a sign to put people at ease; something to fulfill their curiosity. I think I'm going to put a sign on my wheelchair that says "I was in a car accident". That would solve a lot.
Jenni
Saturday, November 15, 2008
Site of Interest
I came across this amazing website called freerice.com. The website consists of multiple choice questions of different subjects that one can answer. For every correct answer, they "...donate 20 grains of rice through the UN World Food Program to help end hunger." I am now officially addicted to answering these questions and watching this bowl fill up with rice knowing that I am making a difference. Click here to visit this website and help end hunger. I have also added the link below under Other Blogs and Sites of Interest. You should also check out the other links that I have posted in that location. If they are of interest to me, they may be to you as well.Jenni
Friday, November 14, 2008
Getting Stronger
I stood for 28 minutes yesterday. I'm excited that my blood pressure is finally compensating when I'm standing. It will drop at first and then rise after a couple of minutes when my body gets used to being straight up at 90°. Yeah for me!
Jenni
Jenni
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